Different kind of usual December Holidays !

This December our holidays started out different - we went to visit our friend  in his beautiful hill-top house in Solan (near Simla). This was a lovely place, with hills all-around, far away from maddening noise/bustle, beautifully architected home and great hosts. Somehow DS was a bit off - not very sure if it was due to the height, the very narrow path leading to the hill-top, or due the fact that it was very cold in there. He was a bit anxious and we could see that he was not totally into it.

After a week there, we decided to deviate from our typical december holidays - which would be a week in Bangalore and then rest of time (multiple weeks) in Chennai - this was driven due to the flood situation in Chennai. So, we decided to stay 2+ additional weeks in Bangalore and then stay just 4d in Chennai and exit Chennai to the US.

It is in Bangalore he totally blossomed - not sure if it was the familiarity of the place, or he had time to think through things. He was completely present 100% of times - there were no  visibble "coping mechanisms". It is as if, he was a completely different person altogether. He was patient, perseverant and at the same time very communicative of his doubt, if he had one and was unable to understand. His favorite grand parents were also with him. Here are some examples:


  1. When we met the ex-Indian fast bowler Srinath, they got talking - Srinath asked DS, that if Dravid is still DS' #1 favorite and what would it take for Srinath to get the #1 spot in DS's all-time favorite list. Pat came the reply - "Mr. Srinath, you come home for Dinner or Lunch - you will be #1 in my books" :-)
  2. He was very concerned about his grand-dad - who had difficult in wearing his shoes - DS would immediately, bend down, strap the shoes for him and help him out.
  3. Every morning, DS would wake up, and on his own, go out for his exercise walk around the apartment (5-6 laps, and finish his 100x jumping rope) - no reminders required.
  4. Since the home is locked through the year, the rooms were dusty, so we used to sleep in the living room at the night - he'd bring the mattresses (carry them on his won - "I will ask for your help if I need them"), bedsheets, pillows and blankets; the next day morning, he'd do the reverse, fold all of them and take them away for storage. He even invented a new way of laying down the pillows - he'd carry them on his back, and would do a somersault, leave the pillows down on the somersault and get up for this next load.
  5. He was quite engaged and present when we visited our friends; and even if they were to talk topics that used to freak him out (about cars that he doesn't like). In a family re-union, he enthusiastically participated in playing Tennis and Badminton. We could clearly see, that in Tennis, he remembered and tried to follow his coach's past instruction (hitting over the ball, follow-through). Leaving their home, he made sure that he had collected all the Gym shirts (including DDs), folded them into a bag for carrying them; and made sure we brought it home.
  6. He had told his grand-dad that he'd take math lessons from him; and at the outset asked for patience from his grand-dad in teaching him. For a few days, he took out his own laptop to study whatever his tutor had taught him back in the US.
  7. DM, DS' aunt had gone dress-shopping along with DS. At the shop, while they were seated and looking around options, an old man walked on - DS immediately stood up and offered his seat to the old man. The old man, who turned out to be the owner of the shop, was so impressed with DS. Later DS told us that working in the Senior Center had taught him to do this.
All of these, in spite, of having exceptions regarding his diet - both on sugar, wheat and dairy, much more frequently. This has made us think on two dimensions:

  1. Do we really need this strict a diet ? We are planning to re-introduce dairy in his diet and see what it does. But still keep it gluten free and sugar free
  2. Maybe coming to India and staying at our home in Bangalore is a good thing - we need to explore options around in India.
We are so proud of DS of how well he has re-wired himself on this visit and how he has been "present" all the time. I wish we can find that magic potion that has transformed DS during this visit.

Introducing THIRD-Party in the conversations

As written elsewhere in the blog, we (as a family) generally do a lot of long drives. During those drives, we tend to talk amongst us, mostly having DS at the center - either he telling a story, or we play-acting as if someone else is with us and how do we interact with them and at sometime, he uses this time to play-act/model past scenarios, where he did something inappropriate and got into trouble at school.

So for this play-acting, he will insist on doing it two ways - the TGP* way (or inappropriately) that got him to trouble; and the SMA* way (the appropriate way).

During one of these drives, on an inspiration, we introduced third-party; while DS and DM are play-acting, I'll be a 3rd-party listener, by-stander or a non-participant in the play. I will be the one who sees DS' reaction and will form opinions and judgment in my mind- I (DD) play the 3P role and I typically switch between a potential friend (who is turned off due to DS' inappropriateness) or a teacher or an aide or a customer at the work-place.

DS is now looking for 3P reactions on all the role-plays; and a few days ago, he connected that with the action and consequences. Like what he did in a class-room (action) was observed by the 3P (his aide) and that resulted in a consequence, that DS didn't like !

Good stuff, DS !

Of Dosas and ability to write !

We have not blogged for a while - while life moves on,  we too discover new things to work with DS, I believe we had written earlier about having a tutor come home and work with DS. This tutor has been working with DS for nearly an year now and the things have settled into a nice rhythm (or routine, depending on the perspective :-))

The tutor himself is not very structured, but we do believe that is the same reason DS likes him quite a bit - they have very conversational classes - the tutor goes from writing a story to science to math to history or just plain vocabulary - he is also letting DS express his interest and then gently pilots the class through.

There is one thing that we hit upon; since DS believes just 2hr/week is studies :-) and nothing else needs to be done, we were asking the tutor to give him some home-work. That has been initiated. There are some topics that the tutor would teach DS and then ask him to write about it. DS typically likes to make powerpoint.

For the powerpoint, we have invented a structure (called DOSA - his favorite dish)
D - Description - a short description of what the subject is, what it  is, et al
O - Origins of the subject - where did it start, how et al
S - Status - the current status of the subject - what it has become, dead/alive, et al
A - Analysis - his own opinion about the subject - where he writes what he thinks

This seems to work - also, it has given him some structure to write/talk more than a couple of sentences about anything and 'get it done'.

Here is an example that he did on Feudal system - still work in progress, but it is a start !!



Dear DS, Thought i will write to you !

Dear Kans,

As you know traveling for me is always not nice, since I have to leave you and amma and go. That is the most painful part for me. If possible, I will like to be around you all the time.

That made me thinking. When I am at home, we do not spend time always together. We are together when we watch a movie, or go on a drive or when we eat. But at other times, you in the room, doing your own thing and I'm in the room working or watching TV.

So, it made me ask why?

Then I realize that you are no longer a small boy - you are an 18 year old young adult. I should treat you so and respect your privacy, your thoughts and your own space. So, maybe, sometimes when you are alone you think about things that is important to you... May be you are thinking about what your life will be, how will you manage your job-sites, how much you need to study for GED or otherwise.

I'm very proud of you, Kan - how much you have changed in the past few years, how much you've understood. We know it has been very hard for you, but you continue to try and make a very sincere effort, in spite of your brain telling you different.

This is the greatest character trait that you have - Trying to understand the noise/dis-order around you and making sense out of it; in spite of challenges, not giving up easily. You are living CARS (Challenge, Aware, Regulate, Sustain) every day! 

I am so proud of you and when I think of you, I'm in awe of you - not many people can attempt to rewire the brain !

Finally, I am so deeply thankful to you. Slowly over the years, you have changed me from what I was to a much better person that I am now. You have very clearly taught me, on what is important in both within myself and outside of me - where the real joy is. At the same time, you have shown me that there are everyday blessings that I can recognize and appreciate. You have made me to look inside and see what is that I can do to change first before I ask others to.

I know that I'm not yet where you are and where I want to be. Your mum may be with you and ahead of me. I may never be that; but, I promise that I will try my hardest and continue to rewire my brain as I walk with you on this journey.

I love you very much Kans, I hope you know how much!

Take care, try hard, grow well, have faith & believe/trust...

Appa.

How do you explain unrelated grief ?

Recently, there was a tragedy in the cricket world; As with every Indian male, DD is also a cricket lover, whose once claim to fame has been associated with Cricinfo in its early days.

The death of the Australian cricketer Phil Hughes has left an unfathomable lien of grief in me (DD). For some reason, I believed that the death has transcended culture, country and people. I really dont know if it is due to the fact that PH died so young (25), or that the game that gave us so much joy for me personally in my life, could be so cruel and if the game is a villain of the whole piece or the fact that something that is so innocuous (a normal bouncer) could create such a tragedy, just due to the fact that perfect storm of several unlikely events co-occurred...

In any case, as a part of overcoming the grief and to be able to express the grief, I also took part in the #putoutyourbats with the cricket bat outside the home.

DS wanted to know what this meant and why are we doing this. I had to explain that grief comes in many ways and this is something that isn't logical. My wife started explaining with a past experience that DS went through a long time ago. When we were at a fast-food restaurant, there was this old man, who was driving a car, but had kind of crash-parked on the lawn of the restaurant and we had paramedics with all sirens blaring treating him. At that time, DS had indicated that he had felt sad for the "thatha" although he wasn't related to us.

That was the parallel we had used to explain what I feel. I'm sure that DS would have a lot more questions, but I hope and am sure that he will understand and also feels sadness and joy in equal measures as he goes through his life.

Conserved !

So we had our first brush with the courts in the US.

As the DS turned 18, we had applied for the limited conservatorship for the kid and had got it secured. It was pretty simple and straight forward process, costed a packet (with lawers :-)), but got it done, as we stood in front of the judge; who ready out the docket # and the case name and said "the court accepts the plaintiff's request"... And we are done !

We still continue to be in charge of our kids finance, medical treatment, his choice of living location et al...

Personally, I had mixed emotion - while one part of me was relieved that we have safeguarded DS' risk and exposure; while the other part explored the what-if scenario - isn't the 18 the time that parent's look forward as their child(ren) step bravely in to the world as independent adults?

Chasing (away) the Dreams

When did DS get his first dream? I'm not sure though DS expressed his dream experiences to DD when he was kindergartner, “picture comes while sleeping.” DD explained all of us gets pictures while sleeping called 

We would talk about our dreams, mostly DS got good dreams. It would be as simple as he went in his favorite car or met a favorite person etc., very rarely DS got a bad dream that made him anxious, like the buildings near our house were destroyed. DS would go on and on to check if it would happen. It took time for DS to understand dreams won’t become 

Since last year, DS gets both good and bad dreams equally, affecting his morning routines. If DS gets a good dream he would not want to get up because he did not want to let go of those feelings. If he gets a bad dream he would not want to get up as he was feeling very sad and anxious the whole day repeatedly saying, “my memory is all mixed up; I have only bad memories, all my good memories are gone.”

I was wondering if his increased awareness causing more bad dreams or if he is having difficulty in regulating his feelings or is his memory going blank because he is stressed or his emotional state connecting to all similar experiences.

DS was having hard time to articulate his dreams especially the bad ones DS would share the good ones towards the end of the day, gradually DS started sharing the bad dreams when he was relaxed. Explaining the dreams are not real was not helping 

As DS started sharing more of his bad dreams, I figured those were related to very unpleasant situations, which DS want to avoid completely (made rules http://tinyurl.com/oz8dlh5). DS expressed the thought or talking about those makes him feel very shaky. I explained when he experiences unpleasant situation in dream, he considers it bad dreams. He can have neutral vibes for those experiences if he can associate the emotional memory to have a positive base memory (http://tinyurl.com/nsdl8zr). If he has a positive base memory for those experiences it will neither be a good nor bad dream. 

This struck a chord with DS, since then DS seemed to have learnt to chase away his bad dreams.

AT-EASE Guiding and Learning Monopoly.

(Written by DM, 4years ago AT-EASE model from www.paceplace.org)

I wanted create an experience of playing Monopoly with DS. We deiced to spend couple of minutes playing the game almost every day. At first DS has to be open and accept the novelty of the game which has many numerical operations (DS has lot of resistance to math), I just allowed DS to be part of the game, just rolling the dice & moving his coins. Once DS is at ease, I slow down, allow DS to take initiative to set up the game, wait for him to tell it is my turn, pick a card, giving the money. 

We play Indian version, US version, and credit card version to bring in flexibility, talk about how they are all similar. I talk aloud how DS can do the calculations, sharing that calculating and managing money are hard, encourage DS to use the calculator, nudging him to do the calculations mentally. It took a while for DS to do oral calculations and I reflect on how oral calculations are no longer difficult.  DS is now empowered to do the calculations orally, distribute money, enjoy playing Monopoly game.

There are still lot more to learn about the game and the concepts of mortgage, making money by building houses and hotels, winning/losing etc, which will bring another dimension of experience.

Feedback from the expert:

This is a wonderful breakdown of playing monopoly...however you are creating a complete experience on every level by maintaining your awareness of the AT-EASE model while guiding DS' experience... There is always more to learn the goal is to stay At-ease through the process of acquiring experience/knowledge...so often parents and professionals are concerned with trying to get the child to catch up with their peers or obtain a left brain cognitive skill that the experience is linear; thus lacking the emotionally rich experience associated with at ease learning resulting in tedium, and the lack of motivation to return to the activity for everyone, which reduces frequency of experience and thereby adversely impacting a child's ability to practice trying in order to achieve mastery...the way you are going about guiding monopoly you are not only creating a positive experience in the moment while ensuring DS' interest in future trying!  Well done!

Relating to Circles of Relationships

(written by DM)
DS had the opportunity of attending couple of family celebrations last summer, where he met most of our relatives (close to extended), was involved mostly by observing what is happening, taking part in his way by welcoming everyone. DS takes pride in being open and welcoming, as kid he had meltdowns when either guest comes home or if he was a guest at someone’s place, sure he has come a long way!

DS likes to be connected with family, friends and relatives, but his lack of social skills and inability to understand the subtle and underlying messages has always posed a challenge. DS was very excited at the thought of relatives will never change unlike the acquaintances, friends who keeps changing. DS had difficulty understanding why some buddies keep in touch, others don’t. We had hard time explaining. We did have concentric circles to represent acquaintances, emerging friends, close friends, best friends moving outer to innermost connecting with examples from our experiences. Courtesy Social Thinking. https://www.socialthinking.com/

DS likes to go for long drives especially to airport and is very excited when we have guests. DD came with the idea of role playing picking up family member(s), building a scenario why they are coming, having a small conversation. We came with idea of concentric circles 0, 1, 2, 3 to represent close to distant family, what we share with each circle is different- we share everything with circle 0 and only central information as they become distant, who falls in which circle. DS was very excited and thrilled about the whole process, which triggered lot of questions from him as we continued. Why they are in that circle, why we share only central message to distant people, what makes family members close, why we feel like crying when someone leaves, if a person is in once circle can they move to a different circle in either direction - what could be the reasons, how do we call each relations in our native language and why etc. All these discussions have enabled DS in relating to different circles of relationships and also expanded his thinking in the area of friends/acquaintance as he began relating and connecting to the instances that happened with buddies, who are good friends, why some avoided, why some sent or did not send mail, who are friendly but not friends, who belongs to which circle & why. DS is articulating every relationship starts at circle 3, takes time to evolve to circle 0 where both have to reciprocate, which is tip of the iceberg.






Expressing and Experiencing Nostalgia

(Written by DM)

DS school has a buddies club where group of NT children spends time with all the children in special day class.  DS eagerly looks forward to buddies club meetings. DS enjoys engaging in all the buddies’ activities. DS has connected with few of them also keeps in touch even after they have moved to college. Each year the School District conducts Special Games, where all the special needs children from all the schools gets to participate. A buddy from the Buddies club accompanies DS and each of his classmates, who will encourage, motivate, and support their buddy to try various games. Their buddies cheer them all the way while taking part. The buddies club had planning session for special games this year, as part of the discussion shared the photos from previous year. DS came home excited, saying “I got to see the special games photos of previous years. It brought back all the good memories and good time. I feel very happy and good”.  DS was checking with me and DD if our memories too will be triggered like this. I explained this is natural for everyone, this experience is called Nostalgia.

DS practices math in IXL. At the end of the day, he would want to try the word problems with familiar names instead of names given, we take turns to replace the names. I started saying names from different categories, from his earlier schools, places we stayed. DS responded, “Once you told the names from the old apartment/school it brought back all the good memories of that place, I feel happy and good” DS has begun to express his Nostalgia or is he only articulating now? Not sure about it but DS has been encoding episodic (emotional) memories of his life experiences in his system in spite of being extremely anxious.

Graduations!!!

(Reflections of DM)

DS will be finishing school, in couple of weeks, he will be earning certification of attendance, which does not mean nor has great value in the world right now, but it is great deal of accomplishment for DS and us. As a kid DS, gets very anxious even for the small changes, he used to be upset and have meltdowns for the moon changing it shape every day, flowers wilting, sun not to be seen on cloudy days, trees being cut for widening the roads…All these helped him to understand about phases of moon, life of flower, water cycle etc.,.

When DS is usually in a situations when he is unable to cope/handle/regulate his emotions, makes rules, which gave him a great sense of security, when DS has to face a situation if he has to do against or not follow the rule, DS will be in fight/flight mode, comes with maladaptive practices. For example, DS may not like when we share one of our beans bags to a friend,  he makes a rule in his mind, “I will never use beans bags.” suppressing all his emotions though DS is a pretty verbal. Someday, we may casually say “Let’s sit in bean bag.” the beanbag becomes a big source of anxiety and will trigger a meltdown. We will all be puzzled what is happening and why. DS had built a many walls around him and has shut many things out of his world. We knew DS had difficulty when suddenly something happens he had difficulty in accepting. We were able to get him do few things. Few very good therapist who have worked with DS, tried to help him carry a back pack, took him to a book store, buying gift for him etc., have all mentioned “The day he happily accepts gift with a smile will be his graduation day”; “The day he will buy a book from Barnes and Nobles will be his graduation day.” We went to PACE place, at Oregon, http://www.paceplace.org/, they figured out about DS makes sense of the world and copes by making rules. Their immersion program made DS aware of him making rules, it was yet another journey for us in facilitating DS with rules he made and in overcoming them, over a period of time, DS was able to tell why he made those rules also was able to make connections to the previous rules, who and how we helped him. DS now happily accepts gifts, carries backpack, buys books etc… DS story about his rules http://www.vibgyorchild.blogspot.com/2014/05/rules-that-ruled.html [Middle school graduation]

DS brain is wired to avoid unpleasant situations by making rules, one of the rule, I consider mother of all the rules was made when he was 3, Colorado (not diagnosed), I usually walk to the school, and one day I picked him up in car later we moved back to India and I never drove, when we have to shift to US in 2008, DS condition to move, “Mom should not drive in US because unexpectedly she drove to playschool.” DS has grown up to where I can drive but not with him. The idea/thought of me driving him has becomes the big barrier for him to plan an outing with his friends, to talk when anyone talk about cars/mom driving, shift the house etc. DS is now in awareness stage that this rule is not helping him, makes him feel nervous, anxious and it affects other things. DS finally said, “One day I will eventually get used to mom driving the car with me. Right now I will not let it affect shifting house or my outing with my friends or anyone talking about cars.” There is lot of underlying unresolved emotions associated with the rules, which needs to be released and negative memories to be replaced with positive ones [High School Graduation]

The day I will drive the car with him to all the places happily will be his College Bachelor’s Degree Graduation!!! Mom driving car with DS will be end result, what he learns during the process of reaching the dream will becomes his lessons for life! A dream yet to be and will be conquered!!!


Rules that Ruled

DS used to tell stories about his experience as a third person. This is a story which DS wrote in August 2010, 3 months after visiting Pace Place at Oregon.

Once there was a boy called Anil he had so many rules. So his parents taught how to work on them.
One time he went to Chennai to his thatha's (grandpa’s) house there was a lift he had a rule that he won't go in the lift so his driver said now we will go in the lift so he took Anil by the lift down so he broke that rule. Then his driver said I am going to ask your appa (dad) to take in the lift in his office he said I worked on lift rule. And he broke that rule.  This is the lift here you did not go in appa's office.
Then his appa took him in lift in his office. Then he enjoyed it.
Then he had a rule that he won't go in bike so his driver had a bike then his driver said we will go for a round. So he broke the bike ride rule
Then he had a rule that he will not go in train so his driver and his amma (mom) took him in from one
Station to another station and he broke that rule.
Next he had a rule of going in auto (a three wheeler) so his amma said we will go in auto for a round so he broke that rule.
Next he had a rule of his uncle coming to Bangalore then his appa said uncle sold his fiat car and he is going to buy Uno car for you and his amma said uncle is coming to tell you that he sold his fiat car and he is buying Uno car. Then he broke that rule.
Next while he came to U.S. Then he had a rule that he won't sleep on long pillow and he will sleep on
Short pillow. Then he hugged long pillow and he broke that rule.
Then he had a rule about U.S. School then he went to the school and broke that rule. Then he had a rule about U.S. School bus then he went on the school bus and broke that rule. Then new had a rule that he won't go in U.S. buses then he went on the bus broke that rule. Then he had a rule about U.S. Trains then he went on the train broke that rule.
Then he had a rule about Chennai train then he went on the train in Chennai and broke that rule.
The he had a rule about Bombay then he went to Bombay.  In Bombay one time he went in bus to hotel in Bombay and he talked to his uncle next day he went to temple , gate way of India and to a garden and he saw Ashok pillar in Bombay and his uncle taught him nice exercise then he broke Bombay rule.
He had a rule about books then he read Tom Sawyer and King Ashoka. 

DS experiences at Pace Place,

Then he went to a place where 3 people came their names were Sam, Tom and Edward.
First day Sam came first and played with him Egyptian war. Tom came and played with him monster game he enjoyed the game. Edward came and played police robber game and he said come we will go to book store and stop at Movie Theater then he went to the book store and enjoyed.
Second day Tom came and talked about backpack he was crying and Tom said calm down.  Then he came out and he said I want a wheel backpack and Tom said if you are crying you need to calm down and he asked tom am I ready he said yes then he said I'll throw the backpack Tom said if you are being so bossy you need to calm down. Then he calmed down then he played monster game. Then Sam came took him to tennis court and Sam said let’s not talk about back pack.
Third day Sam came and said we will buy pant and his appa said what we are going to do is we are going to shop and buy a pant for you. Then Edward came and said let’s play police robber and play horse shoes and go in bridge. Then he taught him rating.
Fourth next day Tom came and said let’s buy a backpack and he bought a backpack. He was talking to his amma about Cupertino that he won't carry backpack and Tom said let’s not talk about Cupertino. Then Tom played monster and played giant swing. Edward played bowling and police robber.
Fifth day Tom came and played monster and he wear connector with him and Sam came and took him for movie Anil cried very badly.

After some time Sam came to California and took a class. Anil, his appa and his amma decided to meet
Sam and he was worried will Sam work on his rules then Anil's appa said he won't break your rules
Once when they came to the hall Sam was working then his appa showed Tom in the camera.
Then he saw Edward's name was there then his appa said one boy had a rule about rides they broke that rule.
And Sam’s name was there one boy had a rule about car container truck the broke that rule.
Once the class was over Anil talked to Sam and his appa said to Sam that he was worried that you will work on his rules then Anil shared that he had rasam (south Indian soup) and when my brother came I played Wii. Then I watched Iron man 2 .Then Sam said you don't need those rules come on.


Challenges ? What is that?

In one of the discussions at work, we were talking about challenges - basically the question was what were the challenges that each one of us faced in our past that made us feel good... I had to think quite deeply about it to even come up with one. I really could not pick one - the reason is its not that I had too many or something like that - but I do have a different perspective of "challenge"... I see every day DS making a great effort, struggle with himself in trying alter his 'DNA' - trying to reprogram himself and re-wire himself; getting over the core-deficits that he has - compared to what he is going through and making a very conscious, honest and tremendous effort to change something that is fundamental to his being, is bring a new perspective to me - More and more,  I realize how blessed rest of us are - we assume stuff and take on stuff to think those are "problems to solve" - really? Let us try rewiring ourselves, like becoming ambidexterous, an introvert becoming an extrovert, a right-hander becoming left-hander !

In any case, DS' struggle and his effort are bearing fruit... See attached email exchange between a doctor and us. We sent an email to the doctor asking for some advice, and this is how she responded back with... It is so heart-warming !!!
(bit modified)

------------------- Forwarded message --------------------------
From: a doctor
Date: Thu, Jan 23, 2014 at 9:33 AM
Subject: Re: Quick Question...
To: DD/DM

Thank you and wish you all a very Happy New Year too. 

I find it very fascinating that you have come up with this model and your own little strategy to help DS. 

Now let's assume that for a minute that DS didn't have core-deficits. He was a regular kid with regular friends and all else. He would still have problems with his peers, issues as a teen, perhaps girl issues etc. Going through all of that could be very enriching, but at times painful and sometimes even taxing. But that's all part of the process of growing up. And one must go through it to emerge whole and complete. It's like a caterpillar- the metamorphosis is not easy, but worth the wait. 

So I'm sure as parents you want to make this ride as bump less and easy as possible, but that might not help with his growth. So in my opinion you are already doing the best for him- letting him learn on his own. Yes- he will lean on you in trying times, and he should know you will always be there for him. It is important to always keep the communication open no matter how trivial the matter.

So as parents sometime it is imperative to let your child fall, just so he knows he can get up, dust off his hands and run on his own again. This gives the child a tremendous boost of self worth and confidence. 

Of course you will tell me that DS isn't like others, so shouldn't we be more cautious with him? This is where I find it fascinating that every time you write to me I see him leaning more and more towards so called 'normal'; and you with normal parental anxieties and worries. 

So it's really great that you are doing so much and relax. He'll be fine. He's a great kid!

Good luck always. 

Warmly,
Doc

--------

On 22-Jan-2014, at 9:57, DD; wrote:

Dear Dr,

First, wish you and your family a very healthy/happy 2014 ! I hope you are doing well.

We wanted to write to you on a quick question... We have come up a model called CARS and base memory. 
CARS implying - Challenge, Awareness, Regulate and Sustain
and Base Memory - A way that he can replace and unpleasant base memory that led him to make some rules about certain things (for example, he didn't like Ambassador car, since when he was a kid, I scolded him and smacked him in his bottom for something)

So now that he is aware of his challenge of the Amby cars, he is trying to regulate it, by going changing the base memory - by traveling in that car; thats one example.
The other one is that - he doesn't like his mom wearing baseball caps - so when she wore it, he took a photo of it on his iPhone and said he'd look at it to sustain his awareness and tolerance of the caps.

We have written about this approach in our blog - http://vibgyorchild.blogspot.com/2014/01/the-good-carbs-model.html

Now the new problem - He is actually going ahead of "challenge" phase in the above model. Earlier, when he wasn't able to handle something emotionally, he used to manage it mentally by making rules in his mind, that later shows up as challenge. Now he is trying hard not to make those rules. For example, he doesn't like his mom driving cars - but now he has understood that and has made a plan for his mom to drive the car - but we can see that he is really struggling with that concept - it is as if he is trying hard to re-write his own DNA and his core that is signature of his deficits... We can see he is going through a lot of "pain", in trying very hard not to make rules to manage an emotional situation. Loss of his imaginary friends and recent expulsion of one of his friend from school has also set him back without having much of friends at school. We believe, he is also "discovering" himself vis-a-vis others that he interacts with.

Although, from a macro view, we think it is really good for him as he understands some of these situations and handles himself, but at a micro view it is really tough to see him go through this phase; we'd like to see if there is anything we can do help him and ease him through this phase.

Anything that you can think of that you think will help, please do let us know !

Thank you very much, in advance,
DD/DM

The "good CARBS" :-) Model..

Sometime ago, we talked about this model of four stages of development here.

This winter holiday, we made a break through on two fronts.

First one on the model above. We made a small change. Challenge -> Aware -> Regulate -> Sustain - this acronyms to CARS - guess what, that are DS's favorite topic. Now he has adopted this model really well. Several times, he has pointed to one of his problem areas and have said, I'm "challenged" here, how do I become aware of it? And on bad dreams over night impacting his motivation next day - he asked us, I'm aware that this happening, how do I regulate it? How do I sustain it? He has used this model on several occasions to ask us questions on how he could handle a situation. We are so glad !!!

The other one we introduced this is the "base memory". The principle is, DS has certain associations he has made due to certain circumstances. For example, he'd not like a blue dress of his mom, since she had scolded him wearing blue dress when he was a kid - such emotions are deep rooted in him. When we introduced the base-memory to him, he now is exploring the reason for certain base memories (that plays right into "Challenge" of CARS). We've revisited some of his base memories and created better experiences for him; and that we (including him) call replacing base memory! 

So CARS and Base-memory anagrams to CARBS :-) But this seems to be good CARBS.

Questions, questions...

As I had mentioned in the previous post on how he has lucidity when he is engaged and not anxious - here are some of the questions he has asked us.......

1. Before mixer and grinder what  did people use ?
2. Before electricity was there how were the dosai made ?
3. Why factory smoke comes?
4. Why does his teacher ask DS, in recycle factory to stay close to him (the teacher) always?
5. Why if someone comes to SSA they will have a car?
6. Why poor people also go to foreign countries?
7. why earlier transportation was slow, now it is fast - what makes is faster and faster?
8. Why population gets more?
9. Why family gets bigger and bigger?
10. why we cant give up one person for another person?

Blind Rage.

I just read this yesterday. DS is almost 17 and has once-in-a-while "rage" issues - typically he tends to show his anger on himself and bites his arm.


I thought the article was good and thought provoking and provides some ideas. I read the article aloud to my son/wife and we discussed on how he could identify the "beginnings of his rage" and what is that we could do. He shared that when he is melting-down, we not answering his (repetitive) questions and remaining silent really angers him. 

And we were thinking answering will exacerbate the situation!

Big Boy, big thoughts !

When we go to wholesale store (Costco), we buy quite a bit of stuff. It fits into two large bags (about 15-20 pounds of stuff) and 2 small bags (5lbs each) and then miscellaneous jars. Usually I carry two large bags in either of my arm from car park to home and DS and DM carry smaller ones (and milk cartons). Yesterday, I had a right shoulder pain and DM forgot the smaller bags to the store. So we had to fill the stuff in three large bags. On coming home, DS insisted that I carry only one (in my left hand) and he'd carry two large bags. I was not certain and told him that I can come back again or he can come back again. But he insisted that I should not carry and he carried two large bags in either of his hands and walked up the stairs too. Quite a feat ! :-) Made me proud !

In his lucid situations, like carrying the bags yesterday, and when he and I go for a walk, he is just too normal! He related how he got "punished" yesterday at school and didn't go to the outing with rest of the class (forget the reason for now). But he shared with me that instead of sitting in the class, he was open and went out to the school quad and there he got to meet his friends and talk with them. And how his friend shared that he is going to be 18 etc. DS said, because he was open in spite of bad thing (that he couldn't go with rest of the class for a community outing) that happened, he saw more good things happening. I told him about the 'when a door closes another opens'. 

We feel that he is going through some severe thought process. There are highs and there are lows. Lows are tough, but I somehow feel, through this stage he will come out better on the other side of deal. We also decided to talk to an expert  once a month, just to bounce off ideas; costs us money, but I think its worth it.

Using Movies for teachable moments (or teachable hours !)

(As written by DM
From an email she wrote to another mother on how she uses movies to help DS).

DS too was and is interested in Tamil movies.

In 2008 DS was hardly interested in anything only movies and cars (Indian). So I decided to use movies as a medium for learning. He would not understand anything. I tell him the story before hand, give the central story. I was not sure how much he understood. He used to dream while watching, only enjoy the stunts and car crashes. Two years back we have watched a movie everyday during summer holidays, some movies again and for him to comprehend better, which will be at the end of the day after he finishes his daily plan.

These are other things I worked on
1. Feelings
2 .Predicting what will happen
3. Teach  new terms as we encounter
4. Read the review of the movie before watching
5. Ask him the central story
6. Tell which parts he liked and did not like and why
7. Connect some incidents to our life as well while reading. Highlight how son shares things to his parents, I choose the movie I want to talk something about.
8. Now we watch movies, I ask him to choose by reading reviews and check with me. Which he does. He doesn't understand the review but he look at the picture or some words and learning to figure out if it is a good movie or if he will enjoy.

After five years I would say he comprehends the movie better.  I consider the following incidents to be highlights which happened recently.
1. He watched the Hindi movie "Black". He told it is similar to his life - the girl has challenges but tries hard to overcome those.
2. Watched a song video where a boy fights for his girl friend, pictured as a battle. DS told the boy is fighting all the obstacles that comes in the way of his goal. I too wanted to fight my obstacles. This is only realization right now, which I hope we will find ways to put it to practice.


Small Mercies - Photospos Free !

DS had a dream, not like Martin Luther King's but nevertheless something that made him extremely happy and excited. When he shared that with us, he was so delighted that we could see his eyes sparkling and twinkling !

The dream was this: He had dreamt that when he was an adult, he was doing the job of technology repairman - where he is fixing computers, printers, TVs etc. And he was driving his favourite Maruti Esteem car to the houses where he goes for his repair-calls. He added, that he will be first ever repairman who will be driving a car to his work !!

In any case, of late, he has also been saying he wants to do GED... we subtly motivate him that GED kind of education will be helpful for him to achieve his dreams, and it isn't going to be easy to do GED... In any case, as another motivation took, I downloaded a picture of Esteem from the net and super imposed his picture, with a sign of his future company in the car ! We hope this would continue to motivate him; we printed a wallet size photo of this, laminated it for him to keep in his wallet !

Thanks to Photopos application - http://www.photopos.com ; its a free app that helps us to play around with the photos; and in this case, extremely helpful !! The app itself is comparable to Photoshop that we pay big bucks for !

Above is (identity blurred :-)) picture that the app helped me create after merging two separate photos !

Organization...

One of the things that we are wondering that would help kids such as DS is "organization" :-) Let me explain - when there is a constant flow of information, their senses tend to get overwhelmed that it shuts down. For us, in a busy/stressful situation, we tend to organize and structure the situation/environment so that we can manage it. Also, even in a normal situation, when we have information coming at us, I believe, we tend to structure/slot/organize the data so that we make it easy to recall or even understand.

For example, if someone talks to me about how decisions are made my the Japanese PM after discussion at Diet, I can relate it to being a gathering of decision makers rather than to food - it is so, since I'm exposed to Indian parliament model. Also, I make some educated guess about Diet now. I dont really need to read about Diet immediately and I dont feel anymore that lack of knowledge of the word "Diet" to be stressful.

So this summer, we are looking to work with DS on some small micro-exercises.

The intent here is to train the brain to think so. So we are looking at a 5-10min  three step micro-exercises that we would work with DS.

The Step-1 is to get the brain-trained on a very physical thing that he can touch, see and can really relate to. So, for example we will take something like a table and see how is it structured. Just talk about why it is that way - why four legs, why not three legs, why flat top etc etc. At Step-1, my supposition is that his brain is tuned to see a structure/organization in something.

As step-2, we give him something physical and ask him to assemble or organize. Takes about 2-3 minute; Ask him why he organized that in the way he did and why not some other way. He typically responds to with his past experience of what he has seen or done or heard. The intent of step-2 is to take the training in step-1 that is still fresh in his mind and apply that thought process to the problem at hand. The brain is at organize mode now.

As Step-3, we want to give him an abstract data; and follow-up with some question. For example, I gave him "Obama is the president of US and lives in the White-house". The key-indices are President, US, White-house. So, my question is what does he recall when he heard that - i prompted him similarities - US with India, Obama with Pranab M, White-house with Rashtrapati Bhavan...

We are hoping with this training, based on organization/structure,  he would be able to convert data into information and then into insight. An example would be - if we tell him
Data = that tomorrow's going to be 95'F
Information = he should get that it will very hot
Insight = and that he will wear cotton clothes and  hydrate himself...

Not an easy exercise, but we hope to try this out this summer !

ps: Btw, when we go to shops or malls or restaurants, we ask him to tell us how those are organized and why so? When we went to a Indian groceries, he told us how the store was organized - the snacks on the front right, two stacks of shelf with spices, grains and condiments and the vegetables in the back and the freezer along the walls. When I asked him why not mix then, he said it would be tough to find things if the "categories" are mixed. Then I asked him, why not freezer in the middle of the shop, he said then they would need to run the wires down to the center and that would not be easy.